That means people are once again tapping into Medicaid, Medicare, and other taxpayer-funded federal health programs after being legally banned because of fraudulent or illegal behavior.

In large part that’s because the government relies on those who are banned to self-report their infractions or criminal histories on federal and state applications when they move into new jobs or launch companies that access federal health care dollars.

The Office of Inspector General for the U.S. Department of Health and Human Services keeps a of those it has barred from receiving any payment from its programs — it reported excluding more than 14,000 individuals and entities since January 2017 — but it does little to track or police the future endeavors of those it has excluded.

The government explains that such bans apply to “the excluded person” or “anyone who employs or contracts with” them. Further, “the exclusion applies regardless of who submits the claims and applies to all administrative and management services furnished by the excluded person,” .

Federal overseers largely count on employers to check their hires and identify those excluded. Big hospital systems and clinics typically employ compliance staff or hire contractors who routinely vet their workers against the federal list to avoid fines.

However, those who own or operate health care businesses are typically not subject to such oversight, KHN found. And people can sidestep detection by leaving their names off key documents or using aliases.

“If you intend to violate your exclusion, the exclusion list is not an effective deterrent,” said , a partner at Arnall Golden Gregory who previously was senior counsel at the OIG. “There are too many workarounds.”

KHN examined a sample of 300 health care business owners and executives who are among more than 1,600 on OIG’s exclusion list since January 2017. Journalists reviewed court and property records, social media, and other publicly available documents. Those excluded had owned or operated home health care agencies, medical equipment companies, mental health facilities, and more. They’d submitted false claims, received kickbacks for referrals, billed for care that was not provided, and harmed patients who were poor and old, in some cases by stealing their medication or by selling unneeded devices to unsuspecting Medicare enrollees. One owner of an elder care home was excluded after he to .

Among those sampled, KHN found:

• Eight people appeared to be serving or served in roles that could violate their bans;
• Six transferred control of a business to family or household members;
• Nine had previous, unrelated felony or fraud convictions, and went on to defraud the health care system;
• And seven were repeat violators, some of whom raked in tens of millions of federal health care dollars before getting caught by officials after a prior exclusion.

The exclusions list, according to Blank and other experts, is meant to make a person radioactive — easily identified as someone who cannot be trusted to handle public health care dollars.

But for business owners and executives, the system is devoid of oversight and rife with legal gray areas.

One man, Kenneth Greenlinger, in 2016 to submitting “false and fraudulent” claims for medical equipment his California company, Valley Home Medical Supply, never sent to customers that totaled more than $1.4 million to Medicare and other government health care programs, . He to eight months in federal prison and ordered to pay restitution of more than $1 million, according to court records. His company to resolve allegations of false claims, according to the Justice Department website.

Greenlinger was handed a 15-year exclusion from Medicare, Medicaid, and any other federal health care program, starting in 2018, according to the OIG.

But this October, Greenlinger announced a health care business with government contracts for sale. , Greenlinger : “I have a DME [durable medical equipment] company in Southern California. We are contracted with most Medicare and Medi-Cal advantage plans as well as Aging in Place payers. I would like to sell,” adding a Gmail address.

Reached by phone, Greenlinger declined to comment on his case. About the LinkedIn post, he said: “I am not affiliated directly with the company. I do consulting for medical equipment companies — that was what that was, written representing my consulting business.”

His wife, Helene, who previously worked for Valley Home Medical Supply, is now its CEO, according to and documentation from the office. Although Helene has a LinkedIn account, she told KHN in a telephone interview that her husband had posted on her behalf. But Kenneth posted on and commented from his LinkedIn page — not his wife’s.

At Valley Home Medical Supply, a person who answered the phone last month said he’d see whether Kenneth Greenlinger was available. Another company representative got on the line, saying “he’s not usually in the office.”

Helene Greenlinger said her husband may come by “once in a while” but “doesn’t work here.”

She said her husband doesn’t do any medical work: “He’s banned from it. We don’t fool around with the government.”

“I’m running this company now,” she said. “We have a Medicare and Medi-Cal number and knew everything was fine here, so let us continue.”

No Active Enforcement

Federal regulators do not proactively search for repeat violators based on the exclusion list, said Gabriel Imperato, a managing partner with Nelson Mullins in Florida and former deputy general counsel with HHS’ Office of the General Counsel in Dallas.

He said that for decades he has seen a “steady phenomenon” of people violating their exclusions. “They go right back to the well,” Imperato said.

That oversight gap played out during the past two years in two small Missouri towns.

Donald R. Peterson co-founded Noble Health Corp., a private equity-backed company that bought two rural Missouri hospitals, just months after he’d agreed in August 2019 to that “precludes him from making any claim to funds allocated by federal health care programs for services — including administrative and management services — ordered, prescribed, or furnished by Mr. Peterson,” said Jeff Morris, an attorney representing Peterson, The prohibition, Morris said, also “applies to entities or individuals who contract with Mr. Peterson.”

That case involved a company Peterson created called IVXpress, now operating as IVX Health with infusion centers in multiple states. Peterson left the company , according to his LinkedIn, after the settlement with the government showed of altering claims, submitting false receipts for drugs, and paying a doctor kickbacks. He settled the resulting federal charges . His settlement agreement provides that if he violates the exclusion, he could face “criminal prosecution” and “civil monetary penalties.”

In January 2020, Peterson was listed in as one of two Noble Health directors. He was also listed as the company’s secretary, vice president, and assistant treasurer. Four months later, in April 2020, Peterson’s name appears on a obtained under the Freedom of Information Act. In addition to Medicare and Medicaid funds, Noble’s hospitals had received nearly $20 million in .

A social media account with a photo that appears to show Peterson announced the launch of Noble Health in . Peterson identified himself on Twitter as of the company.

It appears federal regulators who oversee exclusions did not review or approve his role, even though information about it was publicly available.

Peterson, whose name does not appear on the hospitals’ , said by email that his involvement in Noble didn’t violate his exclusion in his reading of the law.

He said he owned only 3% of the company, citing OIG guidance — federal regulators may exclude companies if someone who is banned of them — and he did not have a hand in operations. Peterson said he worked for the corporation, and the hospitals “did not employ me, did not pay me, did not report to me, did not receive instructions or advice from me,” he wrote in a November email.

A states that “an excluded individual may not serve in an executive or leadership role” and “may not provide other types of administrative and management services … unless wholly unrelated to federal health care programs.”

Peterson said his activities were apart from the business of the hospitals.

“My job was to advise Noble’s management on the acquisition and due diligence matters on hospitals and other entities it might consider acquiring. … That is all,” Peterson wrote. “I have expert legal guidance on my role at Noble and am comfortable that nothing in my settlement agreement has been violated on any level.”

For the two hospitals, Noble’s ownership ended badly: The Department of Labor opened into Noble this March in response to complaints from employees. Both Noble-owned hospitals suspended services. Most employees were furloughed and then lost their jobs.

Peterson said he left the company in August 2021. That’s the same month state regulators cited one hospital for deficiencies that put patients “.”

If federal officials determine Peterson’s involvement with Noble violated his exclusion, they could seek to claw back the company benefited from during his tenure, according to OIG records.

Enforcement in a Gray Zone

, an attorney with the firm Paul Hastings who had prosecuted Peterson while working for the OIG, said the agency has limited resources. “There are so many people on the exclusions list that to proactively monitor them is fairly difficult.”

He said whistleblowers or journalists’ reports often alert regulators to possible violations. KHN found eight people who appeared to be serving or served in roles that could violate their bans.

OIG spokesperson Melissa Rumley explained that “exclusion is not a punitive sanction but rather a remedial action intended to protect the programs and beneficiaries from bad actors.”

But the government relies on people to self-report that they are banned when applying for permission to file claims that access federal health care dollars through the Centers for Medicare & Medicaid Services.

While federal officials are aware of the problems, they so far have not fixed them. Late last year, the Government Accountability Office 27 health care providers working in the federal Veterans Affairs system were on the OIG’s exclusion list.

If someone “intentionally omits” from applications they are an “excluded owner or an owner with a felony conviction,” then “there’s no means of immediately identifying the false reporting,” said Dara Corrigan, director of the center for program integrity at CMS. She also said there is “no centralized data source of accurate and comprehensive ownership” to check for violators.

The , which health care companies are encouraged to check for offenders, notes that the list does not include altered names and encourages those checking it to vet other forms of identification.

Gaps in reporting also mean many who are barred may not know they could be violating their ban because exclusion letters can go out months after convictions or settlements and may never reach a person who is in jail or has moved, experts said. The exclusion applies to federal programs, so a person could work in health care by accepting only patients who pay cash or have private insurance. In its review, KHN found some on the exclusion list who were working in health care businesses that don’t appear to take taxpayer money.

OIG said its exclusions are “based largely on referrals” from the Justice Department, state Medicaid fraud-control units, and state licensing boards. A lack of coordination among state and federal agencies was evident in exclusions KHN reviewed, including cases where years elapsed between the convictions for health care fraud, elder abuse, or other health-related felonies in state courts and the offenders’ names appearing on the federal list.

ProviderTrust, a , found that the lag time between state Medicaid fraud findings and when exclusions appeared on the federal list averaged more than 360 days and that some cases were never sent to federal officials at all.

The NPI, or , is another potential enforcement tool. Doctors, nurses, other practitioners, and health businesses register for NPI numbers to file claims to insurers and others. KHN found that NPI numbers are not revoked after a person or business appears on the list.

The NPI should be “essentially wiped clean” when the person is excluded, precluding them from submitting a bill, said , a former assistant chief for health care fraud at the Department of Justice who is now a partner for the law firm Barnes & Thornburg.

Corrigan said the agency didn’t have the authority to deactivate or deny NPIs if someone were excluded.

The Family ‘Fronts’

Repeat violators are all too common, according to state and federal officials. KHN’s review of cases identified seven of them, noted by officials in press releases or in court records. KHN also found six who transferred control of a business to a family or household member.

One common maneuver to avoid detection is to use the names of “family members or close associates as ‘fronts’ to create new sham” businesses, said Lori Swanson, who served as Minnesota attorney general from 2007 to 2019.

Blank said the OIG can exclude business entities, which would prevent transfers to a person’s spouse or family members, but it rarely does so.

Thurlee Belfrey stayed in the home care business in Minnesota after his 2004 exclusion for state Medicaid fraud. His wife, Lanore, a former winner of the Miss Minnesota USA title, created a home care company named Model Health Care and “did not disclose” Thurlee’s involvement,

“For more than a decade” Belfrey, his wife, and his twin brother, Roylee, made “millions in illicit profits by cheating government health care programs that were funded by honest taxpayers and intended for the needy,” according . The brothers spent the money on a Caribbean cruise, high-end housing, and attempts to develop a reality TV show based on their lives, the DOJ said.

Federal investigators deemed more than $18 million in claims Model Health Care had received were fraudulent because of Thurlee’s involvement. Meanwhile, Roylee operated several other health care businesses. the brothers deducted and collected millions from their employees’ wages that they were supposed to pay in taxes to the IRS, the Justice Department said.

Thurlee, Lanore, and Roylee Belfrey all were convicted and served prison time. When reached for comment, the brothers said the government’s facts were inaccurate and they looked forward to telling their own story in a book. Roylee said he “did not steal people’s tax money to live a lavish lifestyle; it just didn’t happen.” Thurlee said he “never would have done anything deliberately to violate the exclusion and jeopardize my wife.” Lanore Belfrey could not be reached for comment.

Melchor Martinez settled with the government after he was accused of and for a second time committing health care fraud by enlisting his wife, Melissa Chlebowski, in their Pennsylvania and North Carolina community mental health centers.

Previously, Martinez was convicted of Medicaid fraud and was excluded from all federally funded health programs, according to DOJ.

Later, Chlebowski failed to disclose on Medicaid and Medicare enrollment applications that her husband was managing the clinics, according to allegations by theJustice Department.

Their Pennsylvania clinics were the largest providers of mental health services to Medicaid patients in their respective regions. They also had generated $75 million in combined Medicaid and Medicare payments from 2009 through 2012, according to the . Officials accused the couple of employing people without credentials to be mental health therapists and the clinics of billing for shortened appointments for children, according to .

They agreed, without admitting liability, to pay $3 million and to be excluded — a second time, for Martinez — They did not respond to KHN’s attempts to obtain comment.

‘Didn’t Check Anything’

In its review of cases, KHN found nine felons or people with fraud convictions who then had access to federal health care money before being excluded for alleged or confirmed wrongdoing.

But because of the way the law is written, Blank said, only certain types of felonies disqualify people from accessing federal health care money — and the system relies on felons to self-report.

Frank Bianco in Anointed Medical Supplies, which submitted about $1.4 million in fraudulent claims between September 2019 and October 2020.

Bianco, who opened the durable medical equipment company in South Florida, said in an interview with KHN that he did not put his name on a Medicare application for claims reimbursement because of his multiple prior felonies related to narcotics.

And as far as he knows, Bianco told KHN, the federal regulators “didn’t check anything.” Bianco’s ownership was discovered because one of his company’s contractors was under federal investigation, he said.

Kenneth Nash had been convicted of fraud before he operated his Michigan home health agency and submitted fraudulent claims for services totaling more than $750,000, . He was sentenced to more than five years in prison last year, according to the DOJ.

Attempts to reach Nash were unsuccessful.

“When investigators executed search warrants in June 2018, they shut down the operation and seized two Mercedes, one Land Rover, one Jaguar, one Aston Martin, and a $60,000 motor home — all purchased with fraud proceeds,”

“What is readily apparent from this evidence is that Nash, a fraudster with ten prior state fraud convictions and one prior federal felony bank fraud conviction, got into health care to cheat the government, steal from the Medicare system, and lavishly spend on himself,” said.

As Kelly, the former assistant chief for health care fraud at the Justice Department, put it: “Someone who’s interested in cheating the system is not going to do the right thing.”

KHN Colorado correspondent Rae Ellen Bichell contributed to this report.

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A Missouri man who is deaf and blind said a medical bill he didn’t know existed was sent to debt collections, triggering an 11% rise in his home insurance premiums.

An insurer has suspended a blind woman’s coverage every year since 2010 after mailing printed “verification of benefits” forms to her California home that she cannot read, she said. The issues continued even after she got a lawyer involved.

And another insurer kept sending a visually impaired Indiana woman bills she said she could not read, even after her complaint to the Health and Human Services’ Office for Civil Rights led to corrective actions.

Health insurers and health care systems across the U.S. are breaking disability rights laws by sending inaccessible medical bills and notices, a KHN investigation found. The practice hinders the ability of blind Americans to know what they owe, effectively creating a disability tax on their time and finances.

16 and older have a visual disability, according to the National Federation of the Blind. Medical information and bills delivered in an accessible manner is a right protected under various statutes, including the Americans with Disabilities Act, the Affordable Care Act, and the Rehabilitation Act, disability rights legal experts said.

But blind patients told KHN that the letters they receive can be impossible to read if they are not in large print, depending on their level of vision impairment. Some websites have coding incompatible with screen reader technology, which reads text aloud. Some health care systems and insurers fail to mail documents in Braille, which some blind people read by touch.

“I tell them sending me small-print mail is like hiring a mime to communicate to me from outside my window,” Stuart Salvador said over Skype instant messaging. The 37-year-old lives in Greene County, Missouri, and has only residual sight and hearing after a case of shingles when he was 28. “I can tell something is there, but I have no idea what I’m supposed to be getting from that.”

Salvador said it can take up to six hours for him to effectively convert a printed medical bill into Braille. He said he has been sent to collections multiple times by CoxHealth and Mercy hospital systems through their automatic medical debt referral systems after they sent him bills he could not read. As a result, he said, his home insurance carrier raised his annual premium by 11%, costing him an additional $133.51 and hassle.

Nancy Dixon, a spokesperson for Mercy, said that the health system could not find a bill for Salvador that was sent to collections in its records within the past 10 years, and that its policy is to make reasonable accommodations for any patient who requests them. CoxHealth did not respond to requests for comment.

Salvador noted that it’s challenging for him and other visually impaired patients to fight for access to their billing information. If they realize a problem exists, he and other patients told KHN, communicating with the medical systems and insurers can be difficult. But often they may not be aware of the problem until it’s too late. Like Salvador in this instance, some blind patients don’t keep track of written documentation they cannot see, which otherwise might help with a possible legal challenge when overdue billing issues escalate.

Disability rights attorney Albert Elia, who is blind, said blind people stuck with inaccessible bills often are left with two options: to hope for government action or pursue long, costly lawsuits. The National Federation of the Blind and the American Council of the Blind and regarding inaccessible medical information.

Meredith Weaver, a senior staff attorney for Disability Rights Advocates, who helped monitor the implementation of a blind accessibility with health care giant Kaiser Permanente, said her clients often ask for documents to be sent in Braille or be readable by online screen readers. They then typically receive one document that works for them before the cycle begins anew.

“It felt like whack-a-mole to continually make those requests,” she said.

After the terms of the settlement agreement with Kaiser Permanente expired in 2018, Weaver said, she began to hear from clients who faced the same barriers yet again.

Kaiser Permanente spokesperson Marc Brown said that the health system conducted an accessibility review after KHN informed it of Weaver’s comments, and he said the company found “no significant defects in the platform, nor do we know of any inaccessibility issues” that would limit someone from paying their bill or using its website. (KHN is not affiliated with Kaiser Permanente.)

KHN found multiple accessibility issues on the public-facing webpages of Aetna, Anthem Blue Cross, and UnitedHealthcare, major insurers that visually impaired and blind customers flagged as having accessibility problems. The errors, which KHN identified with the help of a tool , a nonprofit web-accessibility organization, include webpage coding that would make it difficult for a blind customer using screen reader technology to shop for a health plan or find an in-network doctor.

After he learned of KHN’s findings, Andrés J. Gallegos, chairman of the , an independent federal agency that advises the White House and Congress, said the council should look more deeply into the issue.

“It’s shocking to the conscience,” he said, noting the law clearly provides for such accessibility protections.

All three insurance companies said they work hard to make their services accessible and strive to fix member issues.

“It’s the year 2022. Everything is being done electronically; everything is being done online,” said Patrick Molloy, a blind 29-year-old in Bucks County, Pennsylvania. “It shouldn’t in theory be terribly difficult to make websites and billing platforms accessible to customers with visual impairments. But it’s the world we live in.”

Getting a lawyer involved doesn’t always solve the problem, said , a web-accessibility specialist at the University of California-Berkeley. The blind 54-year-old sought legal help in early 2020 to stop Anthem Blue Cross from mailing her printed notices she cannot read — which sometimes resulted in lapsed benefits because she could not read the request to sign and return them. She now receives some but not all communication through email, which she had requested, and the company’s online portal.

Greco employs an aide to read her mail to help fill in the gaps every other month, but she has still missed insurance notices and bills. She recently raised the aide’s wages to $30 an hour, as Greco wants to ensure she can retain a trustworthy person with all her personal information. But not everyone can afford to hire an aide.

“It makes you feel helpless and it makes you feel dependent on people you might not want to feel dependent on,” she said.

And even when federal entities step in to fix such issues, they persist. Kate Kelly, a 61-year-old in Greenwood, Indiana, who is visually impaired and has hearing loss stemming from multiple sclerosis, was so fed up with receiving multiple bills in standard-sized text from her insurer, Aetna, that she filed a complaint with the HHS Office for Civil Rights in early 2020.

But after the office came to an agreement with Aetna to stop sending her bills in standard-sized text that fall, she said, Aetna soon resumed sending some documents in text too small for her to read. Kelly pushed HHS to reopen her case. This July, records show, the office closed it due to what it said was a lack of jurisdiction, despite its involvement in obtaining the previous resolution.

She said her large-print bills still get delayed — one from March just came in August — and she is now required to sign for them when they’re delivered. When she tried to use the online portal, she said, her screen reader could not read certain numbers and other information.

“It’s hard to fight back; it’s hard to participate in the system,” she said. “You see why insurance companies get away with it, as it’s not easy to enforce these laws.”

Alex Kepnes, an Aetna spokesperson, said company staffers had reached out to Kelly after KHN’s questions and they “regret the inconvenience that this has caused her.” Kelly said she missed Aetna’s call, and although she called the next day and tried once more, she had yet to hear back as of Nov. 28. She did receive a complaint form from the company — in small print she cannot read.

Meanwhile, Kelly said, her utility company manages to get her a bill in large type every month. And she promptly pays it.

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But over the past few months, the majority of the CDC Foundation’s contracts for those public health workers at local and state departments have ended as the group has spent nearly all of its almost $289 million in covid relief funding. The CDC Foundation, an independent nonprofit that supports the CDC’s work, anticipates that no more than about 800 of its 4,000 hires will ultimately staff those jurisdictions, spokesperson Pierce Nelson said.

That has left many local and state health departments facing staffing shortages as the nation eyes a possible winter uptick in covid cases and grapples with the ongoing threat of monkeypox, exploding caseloads of sexually transmitted infections, and other public health issues.

The public health workforce in the U.S. has been underfunded for decades — just before the start of the pandemic, only 28% of local health departments had an epidemiologist or statistician, a 2020 Associated Press-KHN investigation found. Then, after the pandemic began, public health officials left in droves as they were lambasted for instituting covid rules, blamed for the economic downturn, and grappled with burnout.

And even if funding were available to retain all 4,000 foundation employees, that would not have met public health staffing needs, according to in the Journal of Public Health Management and Practice. The research says at least 80,000 new employees are required for state and local public health departments to implement the minimum package of public health services.

However, the funding for the foundation jobs was always time-limited because it was intended to help the emergency response to covid. And although the American public’s covid concerns have waned, public health experts warn this is yet another example of the failure to properly fund the public health sector with annual, guaranteed money — leaving the country unable to prevent and properly fight outbreaks.

“So the boom-and-the-bust cycle continues despite losing a million American lives to covid,” said , who co-authored the report and heads the de Beaumont Foundation, which advocates for increasing support for the nation’s public health. “How many American deaths is it going to take until we fix this problem?”

Unlike the thousands of inexperienced contact tracers hired to follow up with covid patients to stem the spread amid the surge, this CDC Foundation workforce typically had public health expertise that also could fill preexisting gaps. The foundation’s head, Dr. Judy Monroe, said local and state officials loved the foundation’s ability to cut through hiring red tape, telling her “it was like the cavalry showed up.”

In Chicago, CDC Foundation employees made up about as much as a tenth of the city’s public health workforce, said Dr. , commissioner of the city’s public health department. Although she got 26 of those 66 employees extended into December, she said it’ll hurt to lose the rest. They’ve contributed to everything from public health nursing to communicating the latest guidance about the pandemic to Chicagoans.

Cayenne Levorse, a CDC Foundation leader who helped organize the foundation’s response in Ohio until her contract ended in October, said her 20 employees had to set down not only covid projects but also helping local health departments track cancer clusters, rural health disparities, and environmental health problems.

“Those jobs are just sitting there, all that work left unfinished,” she said.

Five people hired for CDC Foundation covid contracts told KHN they were under the impression their contracts would likely be extended or they would be hired by local or state governments receiving a flood of covid dollars. Only one of them had a contract as of Nov. 8.

Senior epidemiologist Katie Schenk, who has a doctorate in public health, did covid surveillance for the CDC Foundation at the Illinois and Washington, D.C., health departments. Both contracts ran out, and she was left without a job this summer.

“How do you explain that there is no funding for employment in our field when there is clearly so much work to be done?” she asked. “It’s to the detriment of the public health system, which is shedding staff like there’s no tomorrow.”

Sometime in November, state and local health officials are expecting $3 billion in targeted at buttressing the public health workforce. But that funding is coming after most of the CDC Foundation contracts have expired and those employees have moved on with their lives.

Although that sum is substantial and will help close the 80,000-worker gap, many public health officials and experts stressed that the cash is short-term and slated to last five years — which can make positions harder to fill as candidates seek job stability. It also is divided among 50 states, U.S. territories, and multiple large health departments. And some state and local officials, such as those in Missouri and Michigan, have refused to spend covid dollars on public health departments amid the backlash against the pandemic response.

State and local governments sometimes have caps on hiring full-time employees even if federal money is available to do so, Monroe said. Some localities have pay freezes or are not willing to spend more on health officials than on other government employees, making highly skilled workers such as epidemiologists harder to hire, she said. And the CDC Foundation salaries and benefits were sometimes better than what is available at local and state-level jobs, Monroe said. Many of the foundation workers could face a pay cut if they wanted to stay on with the local departments.

“You certainly don’t go into public health to get rich,” said epidemiologist Susan Knoll, who took a private-sector job as a health consultant after working for the CDC Foundation in Ohio. “You get a grant-funded job. And then you’re always looking for another job.”

That’s “the reality of how we fund public health in this country,” said , executive director of the Big Cities Health Coalition.

“We ramp up, and we ramp down, and we don’t think about routine work,” she said. “We should not as a field be losing qualified people who are committed to working in public health. Those are the people who need to be saved.”

At least 38,000 public health jobs at the state and local level were lost from the 2008 recession through 2019. Then covid hit, and 1 in 5 Americans lost a local public health leader amid the political backlash of the first years of the pandemic, a 2021 AP–KHN investigation found.

Some of the remaining workforce is eyeing the door. The director of North Carolina’s department, Lisa Macon Harrison, said that even after instituting flexible benefits, she’s seeing 15% to 20% turnover, which she blames on burnout.

Levorse noted that epidemiologists and other staffers with advanced degrees have student loans to pay off and worry about losing health insurance each time a grant runs out.

The lack of a steady source of money from year to year is jeopardizing health department programs, Chicago’s Arwady said. She estimates the city will lose 86% of its current grant funding in two years, putting wastewater tracking, some of her department’s IT staff, and community-based outreach on the possible chopping block.

“We’re not going to be able to do half a dozen things that the city of Chicago clearly expects we should be able to do. Forget ‘Can I bring vaccine to your house?’ It’s ‘Can I even stand up, like, a vaccine clinic in your neighborhood?’” she said. “It’s that level of how far backwards I’m afraid we’re going to slide.”

Harrison said she’s seen this all before: A flood of funding for pandemic preparedness came after 9/11, and then the money for staffing went away, leaving departments flat-footed for covid.

Castrucci, of the de Beaumont Foundation, rued how the current funding structure ensures that the public health sector, which exists to prevent outbreaks and disease, won’t be given the staff to do so until an emergency arrives.

“You’re basically saying, ‘We will wait for the fire to burn until we hire the firefighters,’” he said.

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That notice involved a paltry sum, $26.50 — absurd really, given he’d previously been told he owed $2.5 million for treatment of his newborn’s congenital heart defect and other disorders.

Raspe and his wife, Maddie, had endured watching doctors crack open the chest of their pigtailed daughter, Sterling, whom they called “sweet Sterly gurl.” The health team performed so many other procedures. But it couldn’t keep her — or her parents’ dreams for her — alive.

The bills lived on for them, as they do for many other families of premature and very sick infants who don’t survive.

“What a lasting tribute to the entire experience,” Kingsley said angrily. “The process was just so heartless.”

More than have infants who require advanced medical attention in newborn intensive care units every year. Some babies stay for months, quickly generating astronomical fees for highly specialized surgeries and round-the-clock care. The services are delivered, and in U.S. health care, billing follows. But for whose children die, the burden can be too much to bear.

A patchwork of convoluted seek to defray these kinds of bills for very sick children. But policies differ in each state, and many parents — especially those, like the Raspes, who have commercial insurance — don’t know to apply or think they won’t qualify.

Also, because many crises that befall premature or very sick babies are in-the-moment emergencies, there may not be time for the preapprovals that insurers often require for expensive interventions. That leaves parents in crisis — or in mourning — tasked with fighting with insurers to have treatment covered.

Three families detailed for KHN how medical bills compounded their suffering during a time when they were just trying to process their loss.

Bennett Markow

As the hospital in Reno, Nevada, was converting a parking garage into a covid-19 unit in November 2020, Bennett Markow came into the world four months early. He weighed less than a pound. His care team loved to sing “Bennie and the Jets” to him as a nod to the jet ventilator keeping his tiny lungs working.

On Jan. 20, 2021, when Bennett was 2 months old, his parents were told he needed to go to UC Davis Children’s Hospital in Sacramento, California, for specialized care that could keep him from going blind. The transfer team would be there in an hour. And the Nevada care team said that because it was an emergency, the family needn’t worry about their insurance or the method of transportation.

Bennett’s eye problem ended up being less severe than the doctors had feared. And Crissa Markow and her husband, A.J., were billed for the plane ride from REACH Air Medical Services, which turned out to be out of network. Jason Sorrick, vice president of government relations for REACH’s parent company, Global Medical Response, said the ride happened during a “lapse” in Bennett’s Medicaid coverage.

The Markows said there was no lapse. They hadn’t applied yet because they thought they wouldn’t qualify — the family is middle-class, and Bennett was on Crissa’s insurance. They did not know they should until a social worker at UC Davis gave them more information — after the flight.

Crissa Markow said her heart dropped to her toes when she realized she was being billed over $71,000, more than she makes in a year as a social worker. (The No Surprises Act, which aims to eliminate surprise billing, could have prevented some of the family’s headaches — but Bennett was born before it went into effect this year.)

Although Crissa was used to working toward solutions, the billing quagmires she found herself in while juggling Bennett’s care, her job, her other son, and the travel logistics to stay with Bennett about 2½ hours away from her home were overwhelming. Crissa estimates she spent six to eight hours a week dealing with medical bills to keep them from being sent to collections — which still happened.

Bennett died last July after doctors said his lungs could not fight anymore. The Markows spent their bereavement leave battling with insurers and other billing agencies.

Finally, Crissa called REACH, the air transport company, and said: “Look, my son died. I just want to be able to grieve, I want to focus on that. Dealing with this bill is traumatic. It’s a reminder every day I shouldn’t have to be fighting this.”

By October, the Markows had settled the bill with REACH on the condition that they not disclose the terms. Sorrick said that the company reaches agreements based on the financial and personal situations of each patient and their family and that the company’s patient advocates had talked to Crissa Markow 17 times.

“If every settlement amount was disclosed publicly, then those rates become the expectation of all patients and insurance providers,” Sorrick said. “Ultimately, that would lead to all patients wanting to pay below cost, making our services unsustainable.”

Crissa Markow’s employer-provided insurance paid for Bennett’s care, not including what was covered by Medicaid. The Markows paid roughly $6,500 out-of-pocket to hospitals and doctors on top of their REACH settlement. But it was not those amounts — which the couple would have happily paid to save their son — but the endless harassment and the hours spent on the phone that haunt them.

“I just wanted to be with Bennett; that’s all I wanted to do,” Crissa Markow said. “And I just spent hours on these phone calls.”

Jack Shickel

Jack Shickel was born with stunning silver hair and hypoplastic left heart syndrome. Even though he was surrounded by wires and tubes, the nurses at UVA Children’s Hospital would whisper to Jessica and her husband, Isaac, that they had a truly “cute” baby.

But his congenital disorder meant the left side of his heart never fully developed. Each year in the U.S., are born with the syndrome.

After two surgeries, Jack’s heart could not pump enough blood on its own. He made it 35 days.

Weeks after his death, when the Shickels were trying to muddle through life without him in Harrisonburg, Virginia, they called the hospital billing department about two confusing bills. They were then told the full cost of his care was .

“I laughed and then cried,” Jessica said. “He was worth every penny to us, but that’s basically $100,000 a day.”

Bills from out-of-network labs and other prior approval notifications continued to overwhelm their mailbox. Eventually, they figured out how to get Medicaid. The Shickels ended up paying only $470.26.

Jessica got the final bills in March, seven months after Jack’s death.

She noted that all of this was happening as the University of Virginia Health System said it was rolling back its aggressive billing practices after a KHN investigation found the prestigious university hospital was putting liens on people’s homes to recoup medical debt.

UVA Health spokesperson Eric Swensen expressed condolences to the Shickel family and added that the health system works to help patients navigate the “complex process” of evaluating financial assistance, including Medicaid coverage.

After KHN reached out for comment, the Shickels got a call from UVA saying that the hospital was refunding their payment.

The hospital care team had given the family a pamphlet about what to do when grieving, but a more useful one, Jessica said, would have been titled “How Do You Deal With Medical Bills After Your Child Has Died?”

Sterling Raspe

Kingsley Raspe likes to say Sterling was “one special little lady” — not only did she have the same congenital heart defect as Jack Shickel, but she was also diagnosed with Kabuki syndrome, a rare disorder that can severely affect development. Sterling also had hearing loss, spinal cord issues, and a compromised immune system.

An explanation of benefits from the Raspes’ commercial insurance indicated the couple would need to pay for Sterling’s care — an amount so large the numbers didn’t all fit in the column. Even Kingsley’s suspicion that the $2.5 million charge was likely erroneous — in large part or in whole — didn’t erase the sheer panic he felt when he saw the number.

A computer programmer making $90,000 a year, Kingsley had decent insurance. He frantically Googled “medical bankruptcy.”

Sterling had been denied Medicaid, which is available to children with complex medical problems in some states. Kingsley had filed an application for the government insurance, which had to be submitted by mail from the family home in Gary, Indiana. In doing so, he broke the strict protocols on covid exposure set early in the pandemic at the near the Illinois hospital where Sterling was being treated and jeopardized his ability to stay there.

In rejecting the application, Indiana cited an income threshold and other technical reasons.

Everyone kept telling Kingsley and Maddie to get divorced so Sterling would qualify for Medicaid. But that wasn’t an option for Kingsley, a British citizen who is in the U.S. on a green card after meeting Maddie on Tinder.

Ultimately, Kingsley’s insurer revised the faulty notice that he owed $2.5 million. The family was told the mistake had occurred because Sterling’s initial hospital stay and surgeries had not been preapproved, although Kingsley said the heart defect was discovered halfway through the pregnancy, making surgery inevitable.

Throughout Sterling’s life, Kingsley did his programming job at his daughter’s bedside, in her hospital room. As a web developer, he that break down Sterling’s expensive care — it helped him make sense of it all. But he cries when he remembers those days.

He hates that Sterling’s life can be reduced to a 2-inch stack of printed-out medical bills and the phone calls he still must endure from errant billers.

Despite receiving a plethora of other bills in the tens of thousands, he and his wife eventually paid their $4,000 deductible, along with a smattering of smaller charges and fees for equipment rentals that weren’t covered. In April, Maddie gave birth to a son, Wren, and Kingsley said he knows Sterling served as her brother’s guardian angel.

“My daughter passed away. I’m not unscathed, but I’m not in financial ruin. The same can’t be said for every family,” he said. “How lucky am I? I went through the worst thing imaginable, and I consider myself lucky — what kind of weird, messed-up logic is that?”

Navigating the NICU

Contact your insurance company to talk through your NICU stay costs, including what is covered and what is not. If your baby’s not already on your plan, make sure to add them.

Speak to a social worker immediately about applying for Medicaid or the Supplemental Security Income program, known as SSI. If your child qualifies, it can dramatically reduce your personal cost for a child with extensive medical bills.

The March of Dimes offers a “My NICU Baby” app designed to help you wade through the overwhelming experience. The nonprofit says the app can help you learn about caring for your baby in the NICU and at home, as well as monitor your baby’s progress, manage your own health, and keep track of your to-do list and questions.

If particular insurers or bills are confusing, reach out to your state insurance office. All states offer consumer support, and some states have dedicated advocates who can help you.

Kingsley Raspe also for other families navigating neonatal intensive care unit stays for their babies.

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But the former English professor said her 2019 surgery with Ophthalmology Consultants didn’t get her to 20/20 vision or fix her astigmatism — despite a $3,000 out-of-pocket charge for the astigmatism surgical upgrade. Green, 69, said she ended up feeling more like a dollar sign to the practice than a patient.

“You’re a cow among a herd as you just move from this station to this station to this station,” she said.

Ophthalmology Consultants is part of EyeCare Partners, one of the largest private equity-backed U.S. eye care groups. It is headquartered in St. Louis and counts some in its networks across 19 states. The group declined to comment.

Switzerland-based Partners Group bought EyeCare Partners in 2019 for . Another eye care giant, Texas-based , was formed in 2020 from Massachusetts-based Webster Equity Partners, a private equity firm, and now it it has 190 physicians across 18 states. Other private equity groups are building regional footprints with practices such as and . Acquisitions have escalated so much that private equity firms now are routinely selling practices to one another.

In the past decade, private equity groups have gone from taking over a handful of practices to working with as many as 8% of the nation’s ophthalmologists, said Dr. Robert E. Wiggins Jr., president of the .

They are scooping up eye care physician practices nationwide as money-making opportunities grow in medical eye care with the aging of the U.S. population. Private equity groups, backed by wealthy investors, buy up these practices — or unify them under franchise-like agreements — with the hopes of raising profit margins by cutting administrative costs or changing business strategies. They often then resell the practices at a higher price to the next bidder.

The profit potential for private equity investors is clear: Much like paying to upgrade plane seats to first class, patients can choose expensive add-ons for many eye procedures, such as cataract surgery. For example, doctors can use lasers instead of cutting eye lenses manually, offer multifocal eye lenses that can eliminate the need for glasses, or recommend the astigmatism fix that Green said she was sold. Often, patients pay out-of-pocket for those extras — a health care payday unconstrained by insurance reimbursement negotiations. And such services can take place in outpatient and stand-alone surgery centers, both of which can be more profitable than in a hospital setting.

The investments that private equity groups provide can help doctors market and expand their practices, as well as negotiate better prices for drugs and supplies, Wiggins said. But he warned that private equity companies’ quest to maximize profitability runs the risk of compromising patient care.

“The problems are accumulating and driving up prices,” added Aditi Sen, director of research and policy at the nonprofit , which provides data and analysis about the economics of health care.

, a health economist at Johns Hopkins University, and her colleagues analyzed private equity acquisitions in ophthalmology, gastroenterology, and dermatology and found that practices charged insurance an extra 20%, or an average of $71, more after the acquisition. Private equity-owned practices also saw a substantial rise in new patients and more frequent returns by old patients, according to their research, .

A KHN analysis also found that private equity firms are investing in the offices of doctors who prescribe at high rates two of the most common macular degeneration eye drugs, meaning the doctors are likely seeing high volumes of patients and thus are more profitable.

KHN analyzed the top 30 prescribers of the macular degeneration eye drugs Avastin and Lucentis in 2019 through a . Private equity companies went on to invest in 23% of the top Avastin prescribers, and 43% of the top Lucentis prescribers — far higher than the 8% of ophthalmologists in which private equity currently holds a stake. Retina Consultants of America, for example, has invested in the practices of four of the top Avastin prescribers, and nine of the top Lucentis prescribers.

“The private equity model is a model that focuses on profitability, and we know they are not selecting practices randomly,” Sen said.

She noted that the volume of patients would be attractive to private equity, as well as the idea of investing in practices utilizing expensive Lucentis prescriptions, which cost roughly $1,300 an injection. Furthermore, she said, after being acquired by private equity, doctors could potentially change their prescription habits from the cheaper Avastin that costs about $40 to Lucentis – improving the bottom line.

Retina Consultants of America did not respond to requests for comment.

Last summer, Craig Johnson, then 74, decided it was finally time to have cataract surgery to fix his deteriorating eyes. He decided to go to CVP Physicians in Cincinnati, calling it “the cream of the crop locally for having eye surgery” as they do “100 a day.” The practice was already part of a private equity investment but has since been acquired by another investor, behemoth EyeCare Partners, .

Johnson, while happy with the results of his surgery, did not know about the manual cutting version of the surgery — the cheaper but just as effective alternative to using a laser. Johnson was using private insurance because he was still working, and he said that resulted in over $2,000 out-of-pocket charges for each eye. Laser surgery typically costs more than manual and , according to the American Academy of Ophthalmology.

Johnson explained that a salesperson, as well as a physician, walked him through options to improve his eyesight.

“Seniors are a vulnerable population because they’re on a fixed income, they’re a little older, they trust you … you’re wearing a white coat,” said Dr. Arvind Saini, an ophthalmologist who runs in California’s San Diego County.

Many patients have no idea whether private equity investors have a stake in the practices they choose because they are often referred to them by another doctor or are having an eye emergency.

David Zielenziger, 70, felt lucky to get a quick appointment at one of Vitreoretinal Consultants of NY’s practices after his retina detached. Zielenziger, a former business journalist, didn’t know it was associated with Retina Consultants of America. He loved his doctor and had no complaints about the emergency care he received — and continued to go there for follow-ups. Medicare covered just about everything, he said.

“It’s a very busy practice,” he said, noting that it has expanded to more locations, which must be making the investors happy.

In 2018, Michael Kroin co-founded , a group that helps doctors sell their practices to private equity firms, to capitalize on the explosion of interest. Eye care is one of the largest areas of investment, he said, because the specialty health care services apply to such a broad market of people.

Sixteen of the 25 private equity firms identified by industry tracker PitchBook as the biggest health care investors have bought stakes in optometry and ophthalmology practices, a KHN analysis found.

Kroin expects private equity investment in practices will only continue to accelerate because of competition from the “1,000-pound gorilla” of hospitals that also are acquiring practices and as the bureaucracy of insurance reimbursement forces more physicians to seek outside help. “If you’re not growing, it’s going to be tough to survive and make a similar level of income as you had historically,” he said.

Some health care experts worry that private equity companies could eventually be left holding an overly leveraged bag if other firms don’t want to buy the practices they’ve invested in, which could lead to the closures of those practices and ultimately even more consolidation.

“I’m not sure that most physician practices are so inefficient that you can get 20% more profit out of them,” said Dr. , chief of the division of health policy and economics at Weill Cornell Medicine’s Department of Population Health Sciences. And, he said, investors count on reselling to a buyer who will pay more than what they paid. “If that doesn’t work, the whole thing unravels.”

KHN investigative reporter Fred Schulte contributed to this article.

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“By pretty much every indicator there is in a campaign, the Dobbs decision has energized and supercharged our race,” said Kris Mayes, a Democrat running for attorney general in Arizona. “People are outraged about this, and you can feel it in the air.”

But they aren’t the only ones who may be testing the laws. The winners of local prosecutorial races will also shape the legal landscape, and, in many states, an attorney general’s ability to bring criminal abortion cases to court ends at a local prosecutor’s doorstep. Called district attorneys, prosecutors, and various other names across the country, these lawyers — not the attorneys general — would make the final decisions on whether criminal charges can be brought against people seeking abortion or the medical professionals that provide them.

The exceptions include states such as Delaware and Rhode Island, which have distinct attorney general and local prosecutorial structures, said David LaBahn, president and CEO of the .

In Georgia, they won’t prosecute people for violating a state law that bans most abortions starting at about six weeks. Although abortion is already figuring into the attorney general race, that office has limited power to step in and stop such local decisions.

Michigan’s attorney general, Democrat Dana Nessel, who is running for reelection, has said she would not enforce a contested 1931 state abortion ban that does in situations like incest or for the health of the mother. And on Friday, a state judge blocked an effort by to charge people .

Democrat Kimberly Graham, an Iowa county attorney candidate, has declared that she would not prosecute . She noted that the Supreme Court’s June decision in Dobbs v. Jackson Women’s Health Organization has highlighted how little people realize the “scary amount of discretion and power” prosecutors have.

“The only real accountability to that is called the ballot box,” she said. “Hopefully, among other things, people will start paying more attention to the county attorney and DA races and realizing how incredibly important these positions have always been.”

It’s not clear how many county attorneys and district attorneys will decide to enforce or fight their state abortion policies. But that leads to an uncertain legal landscape, said former Maine Attorney General James Tierney, a Democrat who is now a Harvard Law School lecturer. “We’re talking real chaos here,” he said.

Some officials have worked to give more jurisdictional powers to attorneys general and governors to bring criminal cases against people who provide abortions and organizations that help people access abortions.

set to take effect in late August will give Attorney General Ken Paxton the power to and go after providers and abortion funds that give money to those seeking abortion care. Previously, Paxton, who is running for reelection and is on securities fraud charges, to local district attorneys who wish to prosecute abortion providers.

On Aug. 4, Florida Gov. Ron DeSantis, a Republican, for what he said was a refusal to enforce state laws on a range of issues that included abortion.

, chair of the political science department at Marquette University, said he expects other states to give attorneys general more power — and take away local control from prosecutors.

Even as the power struggles ramp up, candidates for attorney general say that voters don’t really understand the limits on the office’s authority and that voter engagement in their races remains high. Thirty states have attorneys general slots up for election this year, with in Arizona, Georgia, Iowa, Michigan, Nevada, and Wisconsin.

Jen Jordan, a Democratic state senator who’s running to unseat incumbent Georgia Republican Attorney General Chris Carr, said voters “see what the holder of the office says or does and then begin to believe that is the actual role of the attorney general.” But she acknowledged the limits of the office: “I can’t make a promise that a woman would not be prosecuted by a local district attorney, because they have separate constitutional powers.”

The abortion fight comes as attorneys general have become more activist and gained power in the political system, Nolette said. In recent years, as money poured into races after the Supreme Court’s 2010 decision in Citizens United v. Federal Election Commission — which allowed corporations and donor groups to spend an unlimited amount of money on elections — attorneys general have emphasized their partisan fights over more traditional aspects of the job, such as consumer protections, Nolette said.

“It’s part of the AGs becoming the legal culture warriors on both sides,” he said.

The Dobbs decision increased interest in donating to Democratic attorney general candidates, said Emily Trifone, a spokesperson for the . Trifone said that the day the decision was released, the group raised 15 times what they did the day before. It also outraised the Republican Attorneys General Association in that quarterly filing period.

Michigan’s Nessel said she felt as though no one was paying attention to her reelection race until Dobbs. Her Republican challenger, Matt DePerno, has said he would uphold the state’s contested 1931 law, which allows . In response, her team put out an ad highlighting his remarks opposing abortion ban . Since the Dobbs decision, Nessel went from being in polls to having a .

In the wake of the Dobbs ruling, the term-limited Arizona attorney general, Republican Mark Brnovich, has tried to revive a century-old state abortion ban that was put on hold in 1973 after Roe v. Wade was decided. The Democratic candidate, Mayes, argued the law violates the privacy guarantees in the Arizona state constitution and said she would “fight like hell” to keep it from taking effect. Her Republican opponent, former Maricopa County prosecutor Abraham Hamadeh, , which Mayes said the attorney general can do in Arizona.

Thus far this year, most broadcast TV ads in attorney general races haven’t mentioned abortion, according to an analysis run through Aug. 14 by media monitoring firm Kantar/CMAG requested by KHN. Yet it’s still early in election season. The Democratic Attorneys General Association recently launched for the races in Texas, Michigan, and Nevada.

But 10 times as much money has been spent on attorney general campaign ads with pro-abortion rights sentiments compared with ads that have anti-abortion sentiments, the Kantar/CMAG analysis found.

The divergence on abortion mentions in the ads tracks with what Brian Robinson, a longtime Republican operative in Georgia, has seen. Democratic candidates want to keep talking about Dobbs because they feel as though it benefits their campaigns, Robinson said, while Republicans think they’ve already addressed the issue. “We’re not playing that game,” Robinson said. “We’re going to talk about crime and the economy.”

Republican Attorneys General Association Executive Director Peter Bisbee said in a statement that elected state legislators decide abortion policy and that Democratic attorneys general should enforce the laws of their states.

Nessel pointed out that local prosecutors have always had the discretion to charge or not charge what they choose. That even includes adultery laws on the books, she said.

Still, it could take some time to see how those local district attorneys proceed as they face a backlog of cases made worse by the covid-19 pandemic, said Pete Skandalakis, a former Republican district attorney and head of the Prosecuting Attorneys’ Council of Georgia.

“We are stretched beyond our resources at this point,” he said. “We’re not even trying to keep up — we’re trying not to sink.”

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Tras décadas de falta de financiación y dos años y medio de una pandemia que aumentó su carga de trabajo, y , los profesionales de salud y los funcionarios de salud pública dicen que las clínicas están mal equipadas para otra epidemia.

“Estados Unidos no tiene lo que necesita para luchar de manera adecuada contra la viruela del simio”, dijo David Harvey, director ejecutivo de la Coalición Nacional de Directores de Enfermedades de Transmisión Sexual (ETS). “Ya estamos al límite de nuestra capacidad”.

La viruela del simio —relacionada con el virus de la viruela— no se considera técnicamente una infección de transmisión sexual. Pero se propaga a través del contacto cercano y ahora se está transmitiendo, sobre todo, a través de redes de .

Debido a que el actual brote de viruela del simio causa ampollas o granos en los genitales, muchos pacientes buscan atención para lo que parece ser herpes, sífilis u otra infección de transmisión sexual. Los pacientes a menudo prefieren buscar atención de forma anónima en las clínicas públicas, en lugar de sus médicos de cabecera habituales, debido al estigma de las infecciones de transmisión sexual.

La mayoría de las personas con viruela del simio se recuperan por sí solas en un plazo , pero un 10% necesita atención hospitalaria, según el doctor Peter Hotez, decano de la Escuela Nacional de Medicina Tropical del Baylor College of Medicine.

Aunque la viruela del simio se ha considerado tradicionalmente una enfermedad leve, el grado de complicaciones “ha sido mucho mayor de lo que cualquiera de nosotros esperaba”, afirmó la doctora Mary Foote, experta en enfermedades infecciosas del Departamento de Salud e Higiene Mental de la ciudad de Nueva York, que intervino el 14 de julio en un seminario web presentado por la Sociedad de Enfermedades Infecciosas de América. Además del dolor intenso, algunas personas con viruela del simio corren el riesgo de sufrir cicatrices permanentes.

Las clínicas de salud sexual están tan saturadas que muchas carecen de personal para realizar tareas tan básicas como contactar y tratar a las parejas de los pacientes infectados. 

Las clínicas de salud sexual son una de las redes de seguridad más descuidadas del maltrecho sistema de salud pública del país, que tiene menos autoridad y flexibilidad para luchar contra los brotes hoy que antes de la pandemia de covid-19.

Con registrados desde mayo en Estados Unidos —y en todo el mundo—, los médicos afirman que la epidemia puede haber crecido demasiado y estar muy extendida para poder contenerla.

La doctora Shira Heisler, directora médica de la Clínica de ETS de Salud Pública de Detroit, dijo que está orgullosa de la calidad de la atención que proporcionan, pero que no tiene tiempo para ver a todos los pacientes que necesitan cuidados.

“Simplemente no tenemos personal”, explicó Heisler. “Es un colapso total de la infraestructura”.

La financiación de los Centros par el Control y la Prevención de Enfermedades (CDC) para prevenir las infecciones de transmisión sexual ha disminuido en $16 millones desde 2003, hasta los $152,5 millones de este año, a pesar de que solo los casos de sífilis se han cuadruplicado en ese tiempo. Teniendo en cuenta la inflación, esa financiación ha caído un 41% desde 2003, según un análisis de la Coalición Nacional de Directores de ETS.

Mientras tanto, cientos de profesionales de la salud, locales y estatales, que rastrean, localizan y detienen la propagación de los casos notificados por las clínicas de salud sexual, han renunciado o han sido sustituidos desde que comenzó la pandemia. Algunos se marcharon por agotamiento y otros fueron expulsados de sus puestos de trabajo por las críticas en protesta por las impopulares políticas de máscaras y cierres. Se acaban de anunciar subvenciones federales .

Los sistemas de notificación de datos no se han actualizado, a pesar de las evidentes deficiencias reveladas por la pandemia. Los trabajadores de la sanidad pública siguen utilizando máquinas de fax para tratar los casos de viruela del simio desde Florida hasta Missouri, según declararon a KHN funcionarios de salud pública.

“Incluso con las ventajas de tener una prueba y una vacuna, todavía no hemos invertido lo suficiente en el sistema de salud pública para que podamos responder con la suficiente rapidez”, señaló el doctorTao Kwan-Gett, Director Científico del Estado de Washington. Muchos “te dirán que tenemos el mejor sistema sanitario del mundo. Pero creo que la pandemia de covid-19, así como el brote [de viruela del simio], demuestran que el sistema está roto y necesita ser arreglado”.

No está hecho para la rapidez

La está distribuyendo cientos de miles de vacunas contra la viruela del simio, con un total de para este año, y otros 2,5 millones para el año que viene.

Pero Hotez aseguró que esos envíos de vacunas “pueden no ser suficientes”.

Algunas ciudades se han quedado sin dosis poco después de abrir sus puertas. En la ciudad de Nueva York, donde los casos de viruela del simio se han , el despliegue de la vacuna ha estado plagado de fallas técnicos; el sitio web de la vacuna se ha caído al menos dos veces. Las comunicaron que su ciudad también se está quedando sin vacunas.

Las vacunas contra la viruela del simio pueden prevenir eficazmente la infección en las personas antes de que se expongan al virus.

Los expertos creen que las vacunas también pueden ayudar a prevenir la infección después de la exposición. Pero son más eficaces si se administran cercano con un paciente de viruela del simio, señaló la doctora Trini Mathew, epidemióloga del Hospital Beaumont de Taylor, Michigan. Las vacunas administradas entre cuatro y 14 días después de la exposición pueden reducir los síntomas, pero no prevenir la enfermedad.

Sin embargo, el maltrecho sistema de salud pública no está hecho para actuar con rapidez.

Aunque el de la viruela del simio es máas fácil, algunos sistemas de salud pública no tienen suficiente personal para localizar rápidamente a las parejas de los pacientes y realizarles las pruebas. Y como la mayoría de los profesionales de la salud nunca han manejado un caso de viruela del simio, los pacientes a menudo tienen que hacer múltiples visitas antes de ser diagnosticados con precisión.

Ponerse en contacto con las personas expuestas se complica aún más si viven al otro lado del condado o del estado, lo que puede requerir la coordinación de una respuesta al brote con otros departamentos de salud, según Shawn Kiernan, jefe de la sección de enfermedades contagiosas del Departamento de Salud del Condado de Fairfax, en Virginia.

Décadas de recortes presupuestarios han llevado a muchas clínicas de salud sexual a , lo que dificulta la atención de los pacientes.

Los departamentos de salud pública han perdido miembros clave de sus equipos en los últimos años, incluyendo .

Un análisis de KHN de 2020 reveló que al menos 38,000 puestos de trabajo en la sanidad pública estatal y local han desaparecido desde la recesión de 2008, dejando una fuerza laboral destrozada para hacer frente a las necesidades de salud pública de Estados Unidos, y eso fue antes de que llegara el covid.

“El sistema está agotado”, expresó el doctor Luis Ostrosky, especialista en enfermedades infecciosas en UTHealth Houston/Memorial Hermann Hospital.

Una investigación de KHN/AP de 2020 encontró que solo el 28% de los departamentos de salud pública locales tienen estadísticos o epidemiólogos, los detectives de las enfermedades que investigan el origen y la trayectoria de los brotes infecciosos.

“¿Qué pasaría si solo el 28% de las salas de urgencias tuvieran médicos?”, se preguntó Brian Castrucci, presidente y director general de la Fundación Beaumont, una organización sin fines de lucro que trabaja para fortalecer la salud pública.

La escasez de personal a menudo lleva a los proveedores de salud altamente capacitados a asumir tareas que podrían ser realizadas por personas con salarios mucho más bajos. Cuando la clínica de Heisler está llena, las enfermeras profesionales tienen que limpiar las salas de examen entre los pacientes.

Y aunque un gestor de casos normalmente trabaja con los pacientes recién diagnosticados de VIH y les recuerda las citas, ahora Heisler tiene que hacer esas llamadas ella misma; el gestor de casos tiene quee trabajar ahora en la viruela del simio.

En 2020 se registraron más de de transmisión sexual, según los CDC.

“No creo que ningún departamento de salud en Estados Unidos pueda manejar todas las infecciones que se les reportan”, apuntó Kiernan.

Financiación limitada

El gobierno federal ha gastado miles de millones en la lucha contra la pandemia, y algunas subvenciones relacionadas con covid se utilizarán para ampliar el personal de salud pública en general.

Pero los CDC y el Congreso suelen destinar los fondos a fines específicos, dijo , directora de la Asociación Nacional de Funcionarios de Salud de Condados y Ciudades. “Si tienes a alguien trabajando en covid no puedes reasignarlo a la viruela del simio utilizando el mismo dinero”, añadió Freeman.

Y en algunos estados, ese dinero aún no ha llegado a los departamentos de salud pública o a las clínicas de salud sexual.

Los CDC dieron a Michigan para reforzar su personal de salud pública, pero la legislatura del estado solo se apropió de una parte del dinero. Heisler escribió a varios legisladores estatales rogándoles que liberaran los fondos restantes. Ninguno respondió. KHN se puso en contacto con los mismos legisladores, pero tampoco recibió respuesta.

El personal de salud pública dice que espera que la viruela del simio sea una llamada de atención.

“Espero que esto haga ver la necesidad de invertir más en la infraestructura de salud pública”, indicó Kwan-Gett, del departamento de salud del estado de Washington, “porque sin esa inversión, esto va a seguir sucediendo una y otra vez”.

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After decades of underfunding and 2½ years into a pandemic that , clinic staffers and public health officials say the clinics are ill-equipped for yet another epidemic.

“America does not have what it needs to adequately and totally fight monkeypox,” said David Harvey, executive director of the National Coalition of STD Directors. “We are already stretched to capacity.”

Monkeypox — a cousin of smallpox — is not technically considered a sexually transmitted infection. But it spreads through close contact and is now being transmitted largely through .

Because the current monkeypox outbreak causes blisters or pimples on the genitals, many patients are seeking care for what appears to be herpes, syphilis, or another sexually transmitted infection. Patients often prefer to seek care anonymously at public clinics, rather than visit their primary care doctors, because of the stigma of sexually transmitted infections.

Although most people with monkeypox recover on their own in , about 10% need hospital care, said Dr. Peter Hotez, dean of the National School of Tropical Medicine at the Baylor College of Medicine.

The degree of complications from monkeypox “has been much higher than any of us expected,” said Dr. Mary Foote, an infectious diseases expert at the New York City Department of Health and Mental Hygiene, who spoke July 14 during a . In addition to severe pain, some people with monkeypox are at risk of permanent scarring. Foote said the pain can be excruciating, making it difficult for patients to swallow, urinate, or have bowel movements.

Sexual health clinics have been stretched so thin that many lack the staff to perform such basic duties as contacting and treating the partners of infected patients.

These clinics are some of the most neglected safety nets of the nation’s tattered public health system, which has less authority and flexibility to fight outbreaks today than before the covid-19 pandemic.

With 1,971 monkeypox cases reported since May in the United States — and — doctors warn the epidemic may have grown too large and diffuse for them to contain.

Dr. Shira Heisler, medical director of the Detroit Public Health STD Clinic, said she’s proud of the quality of care she provides but simply doesn’t have time to see every patient who needs care. “We just don’t have the bodies,” she said. “It’s a total infrastructure collapse.”

Funding from the Centers for Disease Control and Prevention to prevent sexually transmitted infections has fallen by almost 10% since 2003, to $152.5 million this year, even though syphilis cases alone have more than quadrupled in that time. Taking inflation into account, that funding has fallen 41% since 2003, according to an analysis by the National Coalition of STD Directors.

Meanwhile, hundreds of local and state health professionals who trace the origins, track the trajectory, and stop the spread of cases reported by sexual health clinics have quit or been replaced since the pandemic began. Some left due to burnout, and others were driven from their jobs by critics protesting unpopular policies on masks and lockdowns. Some federal grants to are just now being rolled out.

Data reporting systems have not been updated during the pandemic, in spite of glaring inadequacies it helped reveal. Public health workers still use fax machines to deal with monkeypox cases in Florida and Missouri, public health officials told KHN.

“Even with the advantages of having a test and a vaccine, we still haven’t invested enough in the public health system in order for us to respond quickly enough,” said Dr. Tao Kwan-Gett, Washington state’s chief science officer. Many people “will tell you we have the best health care system in the world. But I think the covid-19 pandemic, as well as [the monkeypox] outbreak, shows that the system is broken and needs fixing.”

The is distributing hundreds of thousands of monkeypox vaccines now, releasing additional doses as they become available, for a total of nearly 7 million doses within the next year.

But Hotez said those vaccine shipments “may not be sufficient.”

Some cities are running out of doses shortly after opening their doors. In New York City, where monkeypox cases have tripled in the past week, the vaccine rollout has been plagued by technical glitches; the vaccine website has crashed at least twice. said their city is also running low on vaccine supply.

Monkeypox vaccines can effectively prevent infection in people before they’re exposed to the virus.

Experts believe vaccines may help prevent infection after exposure, as well. But they’re most effective if administered within with a monkeypox patient, said Dr. Trini Mathew, medical director of antimicrobial stewardship and infection prevention and control at Beaumont Hospital in Taylor, Michigan. Vaccines given between four and 14 days of exposure may reduce symptoms but not prevent the disease.

Yet the battered public health system isn’t built for speed.

Although monkeypox tests have become in recent days, some public health systems don’t have enough staff to quickly locate and test patients’ partners. And because most health professionals have never managed a case of monkeypox, patients often must make multiple visits before being accurately diagnosed.

Contacting exposed people becomes more complicated if they live across the county or state line, which can require coordinating an outbreak response with additional health departments, said Shawn Kiernan, chief of the communicable disease section for Virginia’s Fairfax County Health Department.

Decades of budget cuts have led many sexual health clinics to of operation, making it harder for patients to receive care.

Public health departments have lost key members of their teams in recent years, including highly trained .

A 2020 KHN-AP analysis found that at least 38,000 state and local public health jobs have disappeared since the 2008 recession, leaving a tattered workforce to confront America’s public health needs — and that was before covid hit. That investigation found only 28% of local public health departments have statisticians or epidemiologists, the disease detectives who investigate the source and trajectory of infectious outbreaks.

More than were reported in 2020, according to the CDC.

“I don’t think any health department in America could handle all the STIs that get reported to them,” Kiernan said.

The federal government has spent billions of dollars fighting the covid pandemic, and some covid-related grants will be used to expand the overall public health workforce.

But the CDC and Congress often designate funds for specific purposes, said , head of the National Association of County and City Health Officials. “If you have somebody working on covid, you can’t just reassign them to monkeypox using the same bucket of money,” Freeman said.

And in some states, that money hasn’t yet reached public health departments or sexual health clinics.

The CDC gave Michigan to strengthen its public health workforce, but the Michigan Legislature appropriated only a portion of the money. Heisler wrote to multiple state legislators begging them to free up the remaining funds. None replied to her.

Public health workers say they hope monkeypox will be a wake-up call.

“I hope this drives home the need for more investing in public health infrastructure,” said Kwan-Gett of the Washington state health department, “because without that investment, this is just going to happen again and again.”

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Galvanized by what they’ve characterized as an overreach of covid-related health orders issued amid the pandemic, lawyers from the three overlapping spheres — conservative and libertarian think tanks, Republican state attorneys general, and religious liberty groups — are aggressively taking on public health mandates and the government agencies charged with protecting community health.

“I don’t think these cases have ever been about public health,” said , managing attorney for the Liberty Justice Center, a Chicago-based libertarian litigation group. “That’s the arena where these decisions are being made, but it’s the fundamental constitutional principles that underlie it that are an issue.”

Through lawsuits filed around the country, or by simply wielding the threat of legal action, these loosely affiliated groups have targeted individual counties and states and, in some cases, set broader legal precedent.

In Wisconsin, a won a case before the state Supreme Court stripping local health departments of to stem the spread of disease.

In Missouri, the Republican state attorney general waged a campaign against school mask mandates. Most of the dozens of cases he filed but nonetheless had a on school policies.

In California, a lawsuit brought by religious groups challenging a health order that limited the size of both secular and nonsecular in-home gatherings as covid-19 surged made it to the U.S. Supreme Court. There, the conservative majority, bolstered by three staunchly conservative justices appointed by President Donald Trump, issued an emergency injunction finding the order violated the freedom to worship.

Other cases have chipped away at the power of federal and state authorities to mandate covid vaccines for certain categories of employees or to declare emergencies.

Although the three blocs are distinct, they share ties with the , a conservative legal juggernaut. They also share connections with the , an umbrella organization for conservative and libertarian think tanks, and the SPN-fostered , described by president and founder Carrie Ann Donnell as “SPN for lawyers.” In the covid era, the blocs have supported one another in numerous legal challenges by filing amicus briefs, sharing resources, and occasionally teaming up.

Their legal efforts have gained traction with a federal judiciary transformed by Republican congressional leaders, who strategically stonewalled judicial appointments in the final years of Democratic President Barack Obama’s second term. That put his Republican successor, Trump, in position to fill hundreds of judicial vacancies, including the three Supreme Court openings, with candidates decidedly more friendly to the small-government philosophy long espoused by conservative think tanks.

“You have civil servants up against a machine that has a singular focus and that is incredibly challenging to deal with,” said Adriane Casalotti, chief of government and public affairs for the .

All told, the covid-era litigation has altered not just the government response to this pandemic. Public health experts say it has endangered the fundamental tools that public health workers have utilized for decades to protect community health: mandatory vaccinations for public school children against devastating diseases like measles and polio, local officials’ ability to issue health orders in an emergency, basic investigative tactics used to monitor the spread of infectious diseases, and the use of quarantines to stem that spread.

Just as concerning, said multiple public health experts interviewed, is how the upended legal landscape will impact the nation’s emergency response in future pandemics.

“This will come back to haunt America,” said , faculty director of Georgetown University’s O’Neill Institute for National and Global Health Law. “We will rue the day where we have other public health emergencies, and we’re simply unable to act decisively and rapidly.”

‘Legal Version’ of Navy SEAL Team 6

The entities pressing the public health litigation predate the pandemic and come to the issue motivated by different dynamics. But they have found common interest amid covid, following the sweeping steps public health officials took to stem the spread of a deadly and uncharted virus.

A coalition of state-based libertarian and conservative think tanks and legal centers, known as the State Policy Network, long has operated behind the scenes promoting a conservative agenda in state legislatures. A KHN analysis identified at least 22 of these organizations that operate in the legal arena. At least 15 have filed pandemic-related litigation, contributed amicus briefs, or sent letters threatening legal action.

Typically staffed by just a handful of lawyers, the organizations tend to focus on influencing policy at the state and county levels. At the core of their arguments is the notion that public health agencies have taken on regulatory authority that should be reserved for Congress, state legislatures, and local elected bodies.

“It’s not about public health, it’s about weakening the ability of government to regulate business in general.”

Edward Fallone, associate professor at Marquette University Law School

, which calls itself the “legal version” of the Navy SEAL Team 6, has filed a flurry of covid-related litigation. Among its victories is a ruling that found Democratic Gov. Tony Evers’ declaration of multiple states of emergency for the same event — in this case, the pandemic — was unlawful. It used the threat of litigation to get a Midwest health care system to as a factor in how it allocates covid therapeutics.

The Kansas Justice Institute, whose website indicates it is , persuaded a county-level health officer in that state to on the size of religious gatherings and stopped a school district from after sending letters laying out its legal objections.

Suhr, of the Liberty Justice Center, noted one of his group’s cases underpinned the Supreme Court’s decision crimping the ability of the Occupational Safety and Health Administration to mandate large-business owners to require covid vaccinations or regular testing for employees. The with the legal arm of Louisiana’s on behalf of a grocery store owner who did not want to mandate vaccines for his employees.

Republican attorneys general, meanwhile, have found in covid-related mandates an issue that resonates viscerally with many red-state voters. Louisiana Attorney General Jeff Landry joined a suit against over mask mandates, when the mandate was lifted. Florida Attorney General Ashley Moody sued the Biden administration over strict limits on cruise ships issued by the Centers for Disease Control and Prevention, arguing the CDC had no authority to issue such an order, and after the federal government let the order expire.

Texas Attorney General Ken Paxton the to sue the CDC over its air travel mask mandate. The case was put on hold after a Florida federal district judge in April invalidated the federal government’s transportation mask mandates in a case brought by the Health Freedom Defense Fund, a group focused on “bodily autonomy.” The Biden administration is fighting that ruling.

Missouri Attorney General Eric Schmitt has sued and sent to dozens of school districts over mask mandates, and set up a tips email address where parents could report schools that imposed such mandates. The have been dismissed, but Schmitt has claimed victory, telling KHN “almost all of those school districts dropped their mask mandates.” This year, legislators from his own political party grew so tired of Schmitt’s lawsuits that they from his budget.

“Our efforts have been focused solely on preserving individual liberties and clawing power away from health bureaucrats and placing back into the hands of individuals the power to make their own choices,” Schmitt, who is running for U.S. Senate, said in a written response to KHN questions. “I’m simply doing the job I was elected to do on behalf of all six million Missourians.”

Numerous Republican teamed up and won a Supreme Court decision staying the OSHA vaccine mandate for large employers, building on the legal arguments brought by Liberty Justice Center and others. That decision in the recent Supreme Court case rolling back the Environmental Protection Agency’s authority to regulate the carbon emissions that cause climate change.

A ‘Shared Ecosystem’

Religious liberty groups were drawn into the fray when states early in the pandemic issued broad restrictions on recreational, social, and religious gatherings, sometimes limiting attendance at worship services while keeping open hardware and liquor stores. Although their legal efforts were unsuccessful in the first months of the pandemic, they gained traction after Trump nominee Amy Coney Barrett, a stalwart conservative, was confirmed as a U.S. Supreme Court justice in October 2020, following the death of Justice Ruth Bader Ginsburg, a steadfast liberal.

Minnesota Gov. Tim Walz, a Democrat, rewrote an executive order after receiving a letter from the , a leading religious litigation group, announcing that Catholic and Lutheran churches would be opening with or without permission. In November 2020, the Supreme Court’s newly constituted majority prevented New York from enacting some covid restrictions through a shadow court docket.

“Courts started saying, ‘Show me the proof,’” said , Becket’s president and CEO. “And when you start saying that ‘casinos, good; churches, bad; Wall Street good; synagogue, bad,’ those things at some point require some explanation.”

In February 2021, Barrett joined other conservative justices in ruling against California in South Bay United Pentecostal Church v. Newsom, ending state and local bans on indoor worship services and leaving the state on the hook for $1.6 million in attorney’s fees to the conservative . That April, the high court struck down California and Santa Clara County rules limiting gatherings in private homes that prevented people from participating in at-home Bible study. Plaintiffs’ lawyers arguing that case had clerked for Barrett and Justice Clarence Thomas.

American Juris Link, meanwhile, helped build out for lawyers to reference and connected lawyers working on similar cases, Donnell said.

Peter Bisbee, head of the , a political fundraising machine, sits on American Juris Link’s board; Donnell said the two talk regularly. Bisbee said the groups have no formal connection but share a common cause of shrinking the “expansive regulatory administrative state.”

Liberty Justice Center’s Suhr said litigation groups like his operate in a “shared ecosystem” to curtail government overreach. “I have not been invited to any sort of standing weekly conference call where a bunch of right-wing lawyers get on the call and talk about how they’re going to bring down the public health infrastructure of America,” he said. “That’s not how this works.”

Still, he said, everyone knows everyone else, either through previous jobs or from working on similar cases. Suhr was for former Wisconsin Gov. Scott Walker, a Republican, and a deputy director of the student division of the Federalist Society.

‘It’s Not About Public Health’

No equivalent progressive state litigation network exists to defend the authority housed in government agencies, said , an associate professor at Marquette University Law School and expert in constitutional law.

The difference, he said, is funding: Private donors, corporate interests, and foundations with conservative objectives have the deep pockets and motivation to build coalitions that can strategically chip away at government oversight.

On the other side, he said, is often a county attorney with limited resources.

“It’s almost as if government authority is not getting defended, and it’s almost a one-sided argument,” he said. “It’s not about public health, it’s about weakening the ability of government to regulate business in general.”

Public health is largely a local and state endeavor. And even before the pandemic, many health departments had lost staff amid decades of underfunding. Faced with draining pandemic workloads and legislation from conservative forces aimed at stripping agencies’ powers, health officials often find it difficult to know how they can legally respond to public health threats.

And in states with conservative attorneys general, it can be even more complicated. In Missouri, a circuit court judge ruled last year that local public health officials to issue covid orders, describing them as the “unfettered opinion of an unelected official.”

Following the ruling, Schmitt declined the state health department’s and sent declaring mask mandates and quarantine orders issued on the sole authority of local health departments or schools “null and void.”

“Not being able to work with the schools to quarantine students — that really inhibited our ability to do public health,” said Andrew Warlen, director of Missouri’s Platte County Health Department, which serves the suburbs of Kansas City. “It’s one of the biggest tools we have to be able to contain disease.”

“You destroy government, and you destroy our emergency response powers and police powers — good luck. There will be no one to protect you.”

Connecticut Attorney General William Tong (D-Conn.)

The legal threats have fundamentally changed the calculus for what powers to use when, said , president and CEO of the de Beaumont Foundation, a nonprofit dedicated to improving community health. “Choosing not to use a policy today may mean you can use it a year from now. But if you test the courts now, then you may lose an authority you can’t get back,” he said.

By no means have the blocs won all their challenges. The Supreme Court recently declined to hear a Becket lawsuit on behalf of employees challenging a vaccine mandate for health care workers in New York state that provides no exemption for religious beliefs. For now, the legal principles that for nearly 120 years have allowed governments to require vaccinations in schools and other settings with only limited exemptions remain intact.

Several lawyers associated with these conservative groups told KHN they did not think their work would have a negative effect on public health. “I honestly think the best way for them to preserve the ability to protect the public health is to do it well, and to respect people’s rights while you do it,” said Becket’s Rienzi.

Connecticut Attorney General William Tong, a Democrat, decried the wave of litigation in what he called a “right-wing laboratory.” He said he has not lost a single case where he was tasked with defending public health powers, which he believes are entirely legal and necessary to keep people alive. “You destroy government, and you destroy our emergency response powers and police powers — good luck. There will be no one to protect you.”

As public health powers fade from the headlines, the groups seeking to limit government authority have strengthened bonds and gained momentum to tackle other topics, said , chair of the political science department at Marquette University. “Those connections will just keep thickening over time,” he said.

And the pressure against local governments shows no signs of stopping: Schmitt has set up a similar to his efforts on masking — but for parents to report educators for teaching critical race theory.

This story was produced by , which publishes , an editorially independent service of the .

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CMS’ chief medical officer, Dr. , said those safety metrics were not designed to properly account for how a pandemic, with its patient surges and workforce shortages, might affect hospital systems.

“Safety, transparency, and quality of care of patients is not enhanced by the use of skewed or inaccurate data, and, in fact, could result in negative consequences for patients,” he said. “CMS wants the public to have complete trust in the data and will make data on quality available when we have a high confidence in its credibility and accuracy.”

But patient safety advocates argue CMS is letting hospitals off the hook for their pandemic performances, and many decried the loss of transparency that suppression of such data would cause.

CMS wants to keep “patients, payers, and insurers in the dark on what happened during the pandemic,” said , director of health care campaigns for the nonprofit U.S. Public Interest Research Group. She added that without penalties, hospitals won’t be forced to change ahead of the next crisis that strains health systems.

“There was no comma in the law that says, ‘Unless there’s a pandemic, you don’t have to pay these penalties,’” Kelmar said.

The proposed rule comes after CMS officials publicly acknowledged in the that progress on lowering hospital-acquired infections — such as urinary tract and staph infections, as well as bloodstream infections associated with central lines — has faltered significantly during the pandemic. Also, a May that used data from 2018 found that even before the pandemic, 1 in 4 Medicare patients were harmed in the hospital, with nearly half of such events being preventable.

The Leapfrog Group, a nonprofit patient advocacy group, estimates that a year die because of the patient safety issues measured by CMS’ ratings.

The metrics that CMS wants to suppress appear on website, formerly known as Hospital Compare. The site allows consumers to view a broad range of quality metrics for hospitals, including mortality and readmission rates. Those scores would continue to appear under the CMS proposal, but the site would not report data from what’s known as the , or “Patient Safety and Adverse Events Composite,” including how often patients had serious complications from potentially preventable medical harm, such as falls and sepsis. CMS will publicly release other safety data, although the pandemic has complicated that, too.

The penalties CMS wants to waive are issued annually through the , which was created by the Affordable Care Act. But because the PSI 90 won’t be available and CMS officials are wary of counting some other metrics skewed by the pandemic, they said penalizing hospitals, as they have done in the past, would not be reasonable.

The poorest-performing hospitals would be spared the 1% Medicare payment reductions that CMS would otherwise have applied throughout the upcoming federal fiscal year, which begins Oct. 1. CMS plans to resume the penalties in the following fiscal year, which begins in October 2023.

CMS’ proposal to pause such penalties is reasonable, said , a professor of health care management at the University of Michigan’s School of Public Health, who has on the hospital quality program. He pointed out that the metrics that underlie these financial penalties are easily skewed by variations in patient mix — such as those triggered by covid surges or lockdowns.

But , co-founder of and board president for the Patient Safety Action Network, said she’s tired of hearing hospitals talk about the administrative strain that reporting the data would create and of CMS saying that adjusting how it compares hospitals would be difficult.

“It’s a real burden if you die or lose your mom,” McGiffert said.

A 2021 KHN investigative series detailed the gaps in CMS’ oversight in tracking and holding hospitals accountable for patients who were diagnosed with covid after entering the hospital.

As the pandemic continues, the agency has not added hospital-acquired covid infections to its patient safety quality metrics, Fleisher said. Centers for Disease Control and Prevention spokesperson Martha Sharan said a joint effort of the CDC, CMS, and the National Quality Forum, a nonprofit that aims to improve patient care value, that would establish such metrics “could be a consideration after the emergency phase of the pandemic.”

The U.S. Department of Health and Human Services currently maintains of covid-19 hospital-onset data, but, as KHN previously reported, such data does not hold individual hospitals accountable. Patient safety experts say the HHS report is likely an undercount because it tracks only hospital-onset covid cases that appeared after 14 days.

Separately, CMS has yet to further regulate the private accrediting agencies that oversee the majority of U.S. hospitals, following from June 2021 that found “CMS could not ensure that accredited hospitals would continue to provide quality care and operate safely during the COVID-19 emergency” and could not guarantee safety going forward. The report cited holes in CMS’ authority to make accrediting agencies execute a special, covid-spurred infection control survey for hospitals to ensure patient safety.

Seema Verma, who served as CMS administrator under President Donald Trump, said hospital-acquired infections are a long-standing issue that covid exacerbated — and one that most Americans are unaware of when they choose where to receive care.

She called for more transparency so patients can decide which hospitals are safe for them. She also called for changes in the accreditation system, which she said is because of between the accrediting organizations’ consulting arms and the hospitals they inspect.

“The American public should have faith that the people that are doing the surveys don’t have a financial interest with the institution they are surveying,” Verma said.

Accrediting agencies have defended their practices during the pandemic, saying they worked with CMS as they could during the emergency.

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